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Monthly Archives: August 2016

On Sunday, September 18th, I will be running the Philadelphia Rock ‘n’ Roll Half Marathon. It’s not my first race, or even my toughest one, but it might be the one that it is the most meaningful. I am racing for my niece and goddaughter, 6 year old Calliope Carr. Cal and I share the same birthday, December 23rd, and a devastating diagnosis. At the age of 40, with three young daughters, I learned that I had MS and that same year Cal was diagnosed with leukodystrophy. Leukodystrophy and MS are both white matter diseases. In these past four years, Cal has lost the ability to walk, talk, and eat. She receives hospice care. Since my diagnosis, I have fought to regain a sort of balance and reclaim control of my body. With determination, hard work, and the support of my family, I have fought my way back and am in the best shape of my life. I am ready to run, and I want to raise $5,000 to help kids with leukodystrophy. These funds will support pioneering research that will help find a cure for leukodystrophies in a decade.

It is not a great time to be adding anything to my life. Sending three girls to college within four years of each other was bad planning on my part twenty years ago. Working full time in multiple positions has been taxing on my mind and body. In addition, my MS moved forward without my permission. This numbness in my feet that only disappeared after two miles into each run even in the summer, was the disease-not the cold New England weather. I also discovered at my last neurology appointment that the unexplained pain in my jaw that had sent me to multiple dentists was Trigeminal Nueralgia. When my Dr. said that some patients felt it was as painful as childbirth I said, “That sounds about right.” I have also been feeling the heat. My skin feels like it is on fire at times, especially this extra hot summer.

So today, I went for a run and ignored my feet because my legs still work. I am lucky that there was no pain in my jaw when my alarm went off at 5 am. And, I am thankful we are out of a heat wave today.

So why did I jump into this project and come out of race retirement? This spring, as we were quickly approaching the 4th anniversary of Cal’s diagnosis, I was reminded of phone calls from my sister four years ago. Those phone calls have changed on both sides as both of our tragedies have progressed.

Four years ago, I realized that when someone you love is going through hell words are cheap. I learned that I don’t know how she feels and her pain can not be my God’s plan. I learned that I can not carry her load or give her a break from suffering. I learned that this is her journey and I am just watching from the sidelines. I have gone to her numerous charity events and cried. Although I consider myself a beast in my life, standing in her corner makes me painfully weak, but I refuse to leave that corner.

This spring, my regular phone calls and texts were met with dead silence. I kept reaching out to my sister but she would not call me back or respond to my texts. She finally called me back and confessed that the typical conversation starter, “How are you?” is the most painful question when you are in the midst of a tragedy. When you love someone all you want to do is help, but offering to help is just a waste of words. I made the decision to not talk about helping and do something.

Honestly, I did not always appreciate my big sister. Growing up, I found her strength and conviction incredibly annoying. We were five years apart and she was Marcia Brady. I can still remember a bottle of Jean Nate’ she had received as a gift that she never opened and allowed to collect dust on her bureau for years. I desperately wanted to crack open that bottle and become Farrah Fawcett with one Jean Nate’ bath. I sat and watched that bottle go unused while she was busy participating in yearbook, French club, Latin club and more. I am not sure all those clubs even existed but I did hear her drone on about all her activities. In high school, I refused to join any clubs as a way to rebel against the establishment. I hated to conform to what anyone in our town expected from its high performing students. Yes, I was a pisser and owe my parents a big fat apology. So, while that bottle was never opened, and eventually disappeared when she went to college, it represented our differences. I never understood my big sister and when people would tell me how great she was I couldn’t hide my surprise.

We were polar opposites growing up, but we have both changed and grown closer with time. Even so, I am convinced that she would not open that bottle of Jean Nate’ and I would feather my hair and wear a red swimsuit with that bottle, no question.

However today her determination is no longer annoying as I witness the beauty in her resilience.

When Maria started the Calliope Joy Foundation years ago, I came up with the idea to have a 5K in the Fall to raise funds. She was all on board until she came up with Cal’s Cupcake Challenge. Of course my sister would pick an event all about sugar and nix my run. I love my sister, and her idea was brilliant. All plans for my run were dropped immediately and my sister redirected her focus on making her new goal a reality. In the past four years she has made Marcia Brady look like a slacker. (Read her blog post about it: Four years later)

On September 18th, I will finally get to run for Callie and for my big sister. My MS has progressed, Cal’s disease has progressed, and both our lives have become more stressful. It will never be a good time to take on a new project, but it is time to make this run happen. When my sister and I speak, instead of asking the normal questions that have become too painful to answer, we discuss running jerseys and fundraising.

I know you get asked to donate to many causes, but I need your help. I have learned that every charity event is not about the t-shirt or food at the end of the race. Those names on the running shirts have meaning. There is a smile, laugh and story that belongs to each name. I will now begin every charity run with a little prayer. I will pray for the name on the shirt, because they are so very special. I will pray for the people that organized the race, because they’re hurting. I will pray for the strength to make a difference because this life is too short.

Please join me in supporting The Calliope Joy Foundation by donating or joining me on the run. I’m hoping my sweat will be hiding my tears on that day. I wish I could be stronger in front of my sister, but no matter what, I am in awe of my sister’s strength and Cal’s beauty.

Although I will be weak from standing in my sister’s corner, I plan on PR’ing on this run, and hope that you can join me in supporting this tremendous cause. I need your help to fill the streets of Philly with sweat drenched cupcake shirts and Cal’s name. We need runners for the 5K on September 17th or the Half Marathon on September 18th.

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Of course, living with lupus affected me in different ways; joint pain, numb extremities, difficult pregnancies and exhaustion would be the side effects of the disease but it would not define my life. Initially I was terrified, but as I began to navigate around life’s detours the landscape of my life changed. I changed.

When I was diagnosed with MS as a mother of three young girls, I used my life experience with lupus to help propel me forward. I knew nothing about this new autoimmune disease but thanks to the Internet I had an opportunity to be terrified and calm all within one double-click.

Living with two chronic diseases changed me as a parent, partner and friend. I lost patience and gained a new level of empathy. I knew pain and realized that I must respect the boundaries of my life without setting any limits to my potential.

I learned

I must challenge my body every day. I run almost everyday with a phone and a mental note about who I could call if I don’t feel well. I position myself by the door in hot yoga classes, to make a fast exit if something doesn’t feel right. When I see a hill, I sprint to the top and catch my breath before I #HIIT the next hill. Being uncomfortable in this life was the only way to transform my life.

I need to listen to my body. I take a day off from life if my body demands, but I don’t take many sick days. If I have pain I go see a Dr, and make sure my actions will not make me worse. Fear of pain is more debilitating than pain.

I can say no. My time is precious and I have learned to be selfish. Someone once told me that, “You can’t clean someones else’s gutters, if your gutters need to be cleaned.”

I will only surround myself with positive energy and love. I started to “block callers” out my life. Today was a gift that was not going to be wasted on the wrong people.

I do not let obstacles stop me from my goal. Obstacles are just opportunities to learn something new. Failures, repeated failures, are finger posts on the road to achievement. One fails forward toward success. C.S. Lewis

My life was the example of respecting the boundaries of life without accepting any limits. I learned that being in fear of pain and failure was more debilitating than pain and failure. Wasting time obsessing about excuses would just slow me down, and grandiose failures were not as painful as setting limits. My life lessons changed me as a mother/coach.

In high school, when my kids complained about sore muscles, illness, exams, coaches or teachers I listened. My response was consistent and I reminded them words are cheap, just do your job. I never filled their head with false praise. Participation trophies would be tossed in the trash. Life never gave you a trophy for just showing up.

If you want more play time , be better. If you want to do better on a test study smarter(not always more). When they were injured makes sure it was not serious, but don’t waste an opportunity.

There was nothing worse than running with your mom who just had a lumbar puncture and suffering joint pain. Yes, I get it hurts…so what. There is nothing wrong with being average, but I was never going to manipulate the system to get my kid more play time or a better grade. Everyone struggles along the way but it is how we get back up and learn from failure that matter. And, I was a master at failure.

Anyone who watched my girls navigate a jungle gym or tryout for high school sports would be suprised with their future. Both girls were recruited to play Division I sports at universities that exceeded their expectations.

Running along Boathouse Row after a Regatta

At the age of 43, MS has given me some detours, my skin feels like it on fire at times, I have pain in my jaw that will stop me in my tracks, my left side has noticeable weakness and yet last weekend I charted a new path with this disease.Last weekend I went hiking for the first time since I was diagnosed and to celebrate my marriage of 22 years. I was scared because of the weakness on my left side and my recent balance issues.

At the age of 18, I hiked my first mountain with my boyfriend, at the time. When I told him that I needed a gallon of water at the summit, he carried my water in his pack. I was young and fit and struggled to climb to the summit. Half way up, I remember asking him if we could just turn around at the first nice view. I was young and in shape and struggled with no pack up that first mountain. I finished that hike with his support and that gallon of water at the summit.

Of course, I was engaged immediately after that hike. After being married for 22 years it was a good test of any relationship and it was why it only took us two weeks to know we ready to get married. For the past 22 years we have both carried that back pack. I carried his baggage as much as he has carried mine.

On our hike to celebrate 22 years married and 25 years together, I wanted to carry the pack with not just my water but all the supplies. I flew up the mountain and ran with that full pack. I have improved with age, experience and my family and friends.

My husband did take the pack as soon as we hit this sign.

It was a good call because the pack was so heavy that I almost fell back a couple of times. So, although I feel like I have #nolimits… I am #nofool. I am conservative risk taker.

At 43, I am still married to the boy who carried my pack. I have learned the difference between respecting life’s boundaries and working through the pain. I believe that pain is weakness leaving the body only if you your respect your body.

I have been warned to not run, be careful with the heat and don’t get too tired. I take naps but they are short. I run on hot days and love my hot yoga classes. MS is a mystery to me and I continue to learn more and more about this white matter disease everyday. My journey is unique but my lesson is universal.

#fuwhitematterdiseases

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In 12 weeks it will be Halloween.

Personally I missed the Girl World generation of dressing up for Halloween. As a teenager I used Halloween as an opportunity to wear my favorite overalls and looked for a costume to indulge my love of comfortable clothing. Halloween has changed as times have changed.

When I was new to parenting, Halloween was an opportunity to showcase my parenting style, that I dubbed “lazy-creative”. I promised my oldest that this ensemble would help her achieve a new level of social status among the other trick-o-treaters. I called it “package that fell off the truck”. Smart phones were not around during this time and our lives were private. I was content to be a costume designer, make a wonderful meal, eat candy all while I wore my stretchy pants on Halloween night. There were no smartphones to document my choices.

Now, with camera phones and social media, Halloween is a time to post great pictures. Just like any other event, people want to share their lives with the world. Some people go all out with the family costume or theme costume. Some just love to get those timeless shots on Facebook or Instagram, so they can hold onto that moment in time. And now as Facebook shares those memories we are reminded of those cute costumes and adorable kids.

In 12 weeks it will be Halloween and the smart phones will be coming out. I want to challenge you to find a new level of success in 12 weeks. When you hand out Halloween candy this year, avoid temptation because you have never felt so good. I want you to add new clothes to your wardrobe that only emphasizes the hard work that you will be putting in over the next 12 weeks. So join me as I prepare to dress up this Halloween as my best self. Even if you won’t be sporting this Wonder Woman costume, you could if you were was so inclined.